3 Stages of Dementia: What to Expect

Ease uncertainty by understanding the stages of dementia

One of the biggest challenges with Alzheimer’s and dementia is the uncertainty – not knowing what’s going to happen next with your older adult.

Experts say that changes in the brain start years before a person shows noticeable symptoms. When symptoms begin to affect everyday life and your older adult gets a proper diagnosis, 3 stages can be used as guidelines to help you plan for the future.

We explain the 3 stages of dementia, common symptoms in each stage, and why your older adult’s symptoms don’t always fit into these stages.

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The 3 stages of dementia

In general, these stages apply to all forms of dementia, including Alzheimer’s. However, it’s essential to remember that someone with dementia may not always fit in a specific stage or go through every stage. The stages do have some overlap and the progression of dementia is different in each person.

Mild dementiaIn the early stage, a person with dementia might still be able to live independently. They might still be able to drive, work, and socialize.

However, they will probably be having memory lapses, like forgetting familiar words or the location of everyday objects. Other people may start to notice that the person is having difficulty or that something “seems off.”

In a thorough medical exam, doctors might be able to detect problems in memory or concentration.

Moderate dementiaThe middle stage of dementia is usually the longest and can last for many years. As the disease progresses, the person will need an increasing level of care.

In this stage, you might notice that they get words mixed up, are often frustrated or angry, or act in unexpected ways, like refusing to bathe. Damage in the brain can make it difficult to express themselves and do everyday things.

Symptoms may include:

Forgetting things that happened recently or major events in their life

Being moody or withdrawn, especially in social situations or when something requires too much thought

Not being able remember significant things like their address, telephone number, high school, etc.

Personality and behavior changes, including paranoia, delusions, and compulsive, repetitive behavior like hand-wringing

Late-stage dementiaIn the final stage of dementia, people progressively lose the ability to engage in the world, to hold conversations, and to control their muscles.

They may still be able to talk, but communicating and expressing thoughts becomes difficult – even for something basic like pain. Their memory and cognitive skills continue to get worse and you might see significant personality changes or the fading of personality altogether.

At this stage, people with dementia typically:

Need 24/7 help with daily activities and personal care

Have increasing difficulty communicating

Lose awareness of recent experiences and their surroundings

Gradually and progressively lose physical abilities, including the ability to walk, sit, and swallow

Become more likely to develop infections, especially pneumonia

A person with dementia doesn’t always fit into one stage

Dementia affects each person differently and changes different parts of the brain at different times. Researchers and doctors still don’t know enough about how these diseases work to predict exactly what will happen.

Someone in the middle stages of dementia could suddenly have a great moment, hour, or day and seem like they’re back to their pre-dementia abilities. They could be sharp for a little while and later, go back to having obvious cognitive impairment.

When this happens, some caregivers may feel like their older adult is faking their symptoms or not trying hard enough. It’s important to know that this isn’t true, it’s truly the dementia that’s causing their declining abilities as well as those strange moments of clarity. They’re not doing it on purpose.

Knowing the stages of dementia helps you plan

Even if the stages aren’t exact and symptoms can be unpredictable, being able to plan ahead is essential.

The truth is that Alzheimer’s and dementia care is expensive and time-consuming. Being financially prepared for increasing care needs is a necessity.

On an emotional level, knowing what type of symptoms to expect helps you find ways to cope with challenging behaviors. It also gives you a chance to mentally prepare yourself for the inevitable changes in your older adult.

22 Comments

Kayla

My grandmother is 81 yrs old and is in the last stage of dimensia.. she’s has been battling this since 2014 and just gradually progressed and got worse. She does walk anymore she’s in bed all the time now and recently she’s been refusing to eat and is losing lots of weight and I can’t understand anything she says anymore. It’s soo heart breaking because that’s my mom she raised me. It’s hard to look at her and see all the memories and love we have and for her not to know me or anything that Wad there. From my age 23 to now 28 this is by far the hardest thing I’ve ever had to deal with especially when her kids are not there and I’m doing this on my own! I feel like I’m stuck in a room and can’t get out! I just want her with me and for her to tell me she loves me and it will be okay. I don’t know what to do

I’m so sorry this is happening. It’s certainly a difficult and heartbreaking situation.

If you haven’t already, check with her doctor to make sure that these recent changes aren’t caused by something that’s treatable, like an infection or other health condition.

Unfortunately, if she is in the end stages of dementia, the only thing you can do is to keep her as comfortable and happy as possible. And find ways for you to cope during this difficult time. Talking with others can provide helpful emotional support — lean on close friends, family, faith leaders, or a caregiver support group.

C Baker

My mother has dementia and is probably in stage 2, Christmas was overwhelming for her, she says she cant hear conversation but we suspect that she just does not comprehend what is being said. Over the festive period she became considerably confused, couldn’t walk properly, wouldn’t eat (she says she has lost her sense of taste) – it was then established on a trip to her doctor that she had a slight UTI and chest infection and is now on antibiotics. She is cared for predominantly by my 90 year old father who is now not in the best of health himself but is reluctant to bring a carer into their home. My brother and I are both local however we work and cannot be there all the time although do as much as we can for them cooking meals, shopping, helping them organise menu’s (they have a wonderful woman who comes and does the cleaning and laundry each week) but there will come a point when she will need help with personal care, they are both resistant to having anyone else in the house. We keep trying to find a way forward that will help them both but are becoming increasingly certain that their current situation is not sustainable. Has anyone else come up with similar concerns?

It’s great that they already have great help from you and your brother and the weekly housekeeper. It’s also wise to be thinking ahead to plan for your parents’ need for a higher level of care. It can definitely be tough to convince someone to accept a more personal level of help.

Michael Patana

I’m so sorry, that must be so frustrating. Does she have dementia? Or is she just not feeling the heat? Many seniors tend not to notice that they’re hot until they become ill from heat stroke or dehydration. It could be that she doesn’t feel hot even if her body truly is. If that’s the case (and she does not have dementia), perhaps you could let her know that it’s too hot for you and that you’ll give her a shirt or light towel to cover herself from the draft of the A/C. It’s possible that the cool air might feel unpleasant to her. Of course, you don’t want her to overheat either, so it would need to be a light covering. In case it’s helpful, here are some additional suggestions for preventing heat stroke in seniors — https://dailycaring.com/6-things-you-can-do-to-prevent-heat-stroke-in-seniors/

If she does have dementia, you may need to tell some fibs and use distractions to get her to stop adjusting the air conditioning in addition to making sure that the cold air isn’t causing discomfort.

There are locking covers that you can get to attach to the wall and restrict access to the controls. You could install one and say that the electric company is forcing everyone to install them and keep the temperature at a certain level (or another story that she might believe, but something to make it seem like changing the temperature is no longer an option for either of you). You could also disguise the A/C controls by placing a black covering over it so she cannot see it. People with dementia often avoid large black areas because it seems like a hole. And when it seems like she wants to adjust the temperature, try to distract her with a favorite activity or a snack or beverage.

If your mother is the type to follow instructions from authority figures, you could say that the doctor has sent a prescription for a certain temperature because people across Florida are getting sick from the heat. You could even “write” the prescription and show it to her, pretending that you got it in the mail. Similarly, you could say that the police have told all homeowners to set a lower temperature because of heat related problems and they will fine/arrest/etc people who do not follow instructions.

Sometimes you need to get creative to find scenarios and explanations that your mother may accept. And if she has poor short term memory, you’ll be able to try different approaches to see which ones work better.

Anonymous

If your mom take blood thinner pills she will be cold. It thins their blood. I went through this with my mom and although hard to do, I decided to buy a transportable AC for my room. Hope this helps. I do feel your frustration….GOD SPEED!

Margaret

Hi my mum is in the later stages unfortunately,but I have kept her at home and pay privately for sits to be in place for when I’m at work, but the district nurse is now saying mum needs to go into a host and I’m not happy about it as I think this will make her abilities nonexistent, she doesn’t have much but we use a standing steady for mum how has great upper arm and leg strength, can you advise if I can object to this as I am her main carer and I have P.O.E. mum has had this for 9years coming. Thanks Margaret

It sounds like you’ve been doing a wonderful job caring for your mum ❤ As long as the situation is safe, where your mom lives is your decision. The nurse can make recommendations, but it’s your decision to make since you are her Power of Attorney. (It sounds like you could be in another country, so laws may be different, but generally this is what is true in the U.S.) It may be helpful to have a conversation with the nurse to understand why she’s making this recommendation so at least you know why she’s saying that.

Vickie Dash

I’ve been receiving daily care articles for several months. Although they are helpful, I have yet to read any articles on Alzheimer’s and alcoholism. This is particularly difficult differentiating the effects of alcohol and the changes due to dementia. My husband refuses to quit drinking, but has sincerely tried to curtail his alcohol use with minimal success. Any recommended articles???? Thanks

I’m so sorry about the situation. That’s an important topic and one that we’ll be addressing in the near future. In the meantime, hopefully our articles about managing and reducing dementia symptoms and behaviors will be helpful — http://dailycaring.com/tag/difficult-behaviors/

Teresa

My aunt has become very forgetful over the last year. She cannot remember for five minutes what has just been talked about. Two of her sisters go to doctor with her and swear dr says she is only depressed. My aunt has land and savings and they dont want her diagnosed with dementia until a former will is done. One aunt forged her name on a will leaving land to her son and granddaughter. Her granddaughter is notary. I am nice and have no say even though i spend a lot of time there. I dont know how to help my aunt.

This is a tough situation. Your relatives could truly be trying to do what they think is best for your aunt or it could be a case of financial elder abuse. It sounds like your aunt should have a full medical exam by a doctor who is experience in dementia care to rule out any treatable causes of dementia-like symptoms or to be diagnosed with dementia.

But if you are not her Power of Attorney or involved in her care, you don’t have the right to force this to happen. You’ll need to work with your relatives as best you can. You may want to start by having a private conversation with one person to express your concerns and see how they respond. It’s possible that they don’t notice her symptoms or want to accept that something is going on with her health.

If you feel strongly that they’re taking advantage of your aunt and trying to steal her money, you may consider reporting them to Adult Protective Services. However, this is an extreme step and will most like cause significant damage to your relationships. Plus, the outcome isn’t guaranteed. Adult Protective Services will investigate the situation and you may or may not agree with their determination.

Rich Jones

My wife is well into stage two, actually needed to work on her for ere shower this morning. She still thinks she can drive, however she cannot see past the hood of a car, and her head is always pointing towards the ground, she is even dangerous in the electric carts at the stores. Cannot tell you how many times she has run into me and others, also no display is safe if she is around. I will care for her as long as possible, but she may end up in a care facility at some point.

Anonymous

That’s very true, the unfortunately reality is that long-term care is expensive. Hiring caregivers to care for someone 24/7 in the home is incredibly expensive and compared to that, assisted living / nursing care seems like a bargain. If the family is able to provide most of the care, it’s more cost effective to care for the older adult at home. But if their care needs become more than the family can safely handle at home, moving to a care community may be necessary.